Dilated Cardio Myopathy

Can't wait to go for my oxygen intake results on Wed and then to the cardiologist on Thurs. I can't wait to talk to the lung doc and cardiologist. I only have 20% of my heart pumping and that is not pumping correctly. They say I am a candidate for pacemaker/defib so we should find out at this appt where things are going. I hope I get some "real" answers and not all this waiting. I am hoping to find my pep again. I am so very tired all the time. All I want for xmas is some energy. Afraid of all the anticipation of talkin to lung doc and cardiologist this week. Lung doc asked me a few weeks ago if cardiologist talked to me about a heart transplant? I said no just a pacemaker/defib. But have been waiting with anticipation to talk to them both this week.

36 replies

My post is so old above. Why is it featured and not something more current? This is old news. I do have 20-25% before the defibrillator and 30-35% after I was told. I am always tired. I find it hard to concentrate and read. I had my defibrillator done on 12/27 then the leads came loose and they called it twitter syndrome the medtronic tech told me I have twitter syndrome where you play with it in your sleep. I honestly do not see how I would really think that would hurt. But I had no problems till I went to the defib doc. He told me the leads were loose. I had the defibrillator redone on 2/3/2012 and then I was back in the hospital for bad left upper arm pain and found out that I had three blood clots on 2/10/2012. I have been on coumadan and four shots in my belly and this other drip I can't remember it all. I was never glad to go home as every time I am in the hospital it seems like nobody sleeps. There is always someone hollaring and moaning to keep the entire floor awake. I have been out of the hospital since 2/13/2012. I am on coumadan for three months from 2/10/2012 when I was in the hospital. Then I am off the coumadan for a month then they will redo my doppler and bloodwork to check to be sure the clots are all gone. They keep fluctuating my coumadan dosage from 5 mg to 7.5 mg and then bloodwork every two weeks. It use to be every week but now it is every two weeks.

I have an echo and see the cardiologist the end of May. I am on Coreg 25 mg 2 x day, Metforman 500 mg 2 x day, Spironolact 25 mg 1 x day, Diovan 80 mg 1 x day, lasix 20mg 1 every other day, coumadan 5mg 5 mg one day then 7.5 the next and flip flop, I am also on lipitor 20mg 1 x day. Recently they took me off my liptor because I have been miserable and extremely achey. I am off of it for three weeks and then the cardiologist wants to hear from me. I am very glad to report that by them taking me off of it it has made a tremendous difference in the achiness and pain for the better. My defib doc wants me to talk to the cardiologist about changing it to crestor.

Now if I could find some energy and not be so tired. And find some concentration. I am told this happens due to lack of oxygen. Wish I knew how to increase the oxygen I hate wanting to study something and not being able to concentrate and remember things. I end up making lists and notes. I am only 52 and I have a 17 year old son and a husband. Idk. I am 207 lbs and 5ft 7 in. I have developed spreadsheets to keep tract of everything I eat. Another for my bp, pulse, and weight, and diabetic numbers. I do this with an automatic blood pressure cuff because I have carpal tunnel and don't have the strength to pump a regular bp cuff. But it works. I hope that my lists helps the doc be able to help me. Other than that I am like everyone else seems like biding my time and praying. So that is my update. Hope I find you all well. ~ Maja

Thanks for the comprehensive update! With regard to why this is featured, it is because the post has great information and touched a lot of members.

You probably do not realize it but your story, your experience, is very powerful. People come here for help and information but they also come here to know they are not alone. The bigger the "crowd" the better.

I also take Crestor (rosuvastatin) and find I can take a lower dose. Also, Crestor is eliminated from the body via a different metabolic pathway (CYP2C9 and CYP2C19) versus Lipitor (CYP3A4). This means it will affect people differently depending on how effective their particular metabolisms behave. That is why switching is often an effective strategy to combat side effects.

I would say based on your latest data your biggest challenge is bringing down your Body Mass Index (BMI). At 32.7 it puts you in dangerous territory, BUT, the benefits of reducing it will affect virtually every organ in your body - especially your heart.

The best thing you are doing is tracking your health. It is a powerful way to understand how your health is being affected and to know how even small changes in your health behavior affect your body. Because we are different, individual tracking is the ONLY way to efficiently treat any medical condition.

All medical studies bury individual reactions and results into an average, While most people may be helped there are always some who won't be helped - or may even be hurt! Any FDA approved drug or procedure be great if you are one of the many - but what of you are not?

If you want optimum the best - perhaps only - way to acheive it is track as many health variables as you can and note how your body responds over time. But remember, most often your body responds slowly. It often takes many years to get sick. Don't expect to see rapid changes as you track. Most changes take at least 3 months. Others can take 3 years! Tracking must become a way of life.

How do you know that my BMI is 32.7? Can you tell me how to figure my body mass index? I have no clue. What else can you tell me about BMI how do you know that 32.7 is a dangerous territory? No body has even spoken to me about BMI. Maybe you could start a new discussion on BMI and educate us on it. I know I was not aware of this till you mentioned it. Thanks!

Docs don't mention BMI for rmany reasons - all bad. They include laziness, ignorance, and desire to get you in and out with a prescription rather than spend the time and effort to educate and work on difficult treatments like BMI reduction. It is a real crime as BMI reduction (as long as you don't go too low) is a powerful treatment.

I will have to find some time to read. I have been so very tired to the point I can't stand myself. Doc just called with bloodwork and my magnesium is low. I am gong over to pick up prescription. Hope it helps. So tired of all these pills but have to take them.

Redorangedog, What did your pulmonary function tests show? Are you a candidate for oxygen at home? It might help give a little boost of energy if your oxygen saturation is low and help your heart with the work load. Best of luck to you, I have seen many successful heart transplants. My sister said it was like being reborn. Red

I don't see the pulmonologist till tomorrow. I didn't know that is what that test was all about. This is all new to me. So much to wrap my head around. Scarey. It weirded me out for the lung doc to talk about a heart transplant it was such a shock. And then my mind was racing. As weird and as ungrateful as it may sound I could not imagine someone else's heart in my chest. Don't ask me why so much to wrap my head around. If your sister feels reborn she must be doing well and for that I am glad for her. I will give you all a update after I talk to the lung doc tomorrow and cardiologist on thurs. So much to absorb.

Redorangedog, It is much too hard to understand all at once. That is why these specialists have to go to school for so many years. You can keep copies of all your tests to refer to. Know what your numbers are and what they should be. You can think about a transplant like getting a new engine for your car. The body has a lot more miles t0 go but the engine needs to be rebuilt. There is only one part needed to make the whole machine operate like new. That is a great way to look at it. My sister had a tune up ( 77 ) and can run another 100,000 miles. If her heart came from a person or a pig, I don't care as long as it works. "There is nothing that G-d and you can't handle." Red

Lung doc said my oxygen test came back normal. I said then why am I tired, breathless, and cold all the time. He said to talk to my cardiologist tomorrow he feels it is related to the dilated cardio myopathy. I asked him about his comment about the heart transplant he said he asked because I said I had 20% of my heart pumping and that was not pumping correctly. He said to let that up to the cardiologist. I said to him it spooked me I thought maybe he saw something that the other doc did not see and that heart and lung go hand in hand. He said no. So now I wait to toss this out to the cardiologist tomorrow.

Thanks! for the support! Got son off to school now to wait till 11:30am to go to Lung Doc. Anymore I hate going to docs all I get is bad news. I have been dropping things I have carpal tunnel in both hands. Went for gyne appt now I have a dropped bladder. Can't do any surgery for either because of my heart too high risk. Doing physical therapy for both. Wondering what the lung doc will say today and the cardiologist tomorrow? Wish this was a bad dream and I would wake up tomorrow and things wouldn't be. Oh well…Onward and upward I guess. Update to follow after cardiologist appt tomorrow.

Redorangedog, Scary is not knowing what is wrong. Scary is not having medical care. Scary is your son not having a wonderful mother that cares about his health and education. Power is having options that will allow you to live to be a grandmother. You are a strong educated woman with choices and people that love you and want and need you to be there to wash their clothes, make them dinner, love them like only a mother and wife can. What is a little extra hardware that can prolong your life with people that love and care about you. Of course it is frightening not to know why such a robust person is suddenly tired and can't do all of those wonderful things that you have been doing for years to make a wonderful life for your family. Look at all those things that you have done and maybe have taken for granted for your family for so long. Listen to your body. It is telling you to get some rest. Your brain has dibs on the oxygen available to your body. If you push yourself to keep on pushing you can do permanent damage to your over-worked heart muscle and cause it to not be able to push out the oxygen needed to supply the rest of your body with the oxygen it needs to help you think and walk and take your loving son to school and give your husband the kiss and hug he looks forward to everyday. Take care of yourself so you can take care of your family. If you were on a plane that got in trouble, the signs would say, "put on your oxygen first, so you can help your child to put on his oxygen." It is so much time consuming trouble to see all those doctors that have to do tests to tell you how to help yourself. Especially when you are used to helping all of those people that you love so dearly. Even Superwoman needs Superman for help, sometimes. You will look back at this time of confusion as a learning experience, to see what is needed for you to continue helping the people that mean the most to you and laugh at the small sacrifices you bravely made to keep your family together with you as the caption. I will gladly hold up your bladder for as long as you need. I know that you would hold up anybody's bladder that you saw dropping. That is a promise to you. Truly, Red

Maja,I hope you got some better news today. I have read the threads here, and I feel for you. I don't have the low EF that you have, but I feel as HeartHawk says, "It beats the alternative!" I woke up on the right side of the dirt today, and that's what keeps me going, besides my twin boys who are nearly 15 and were nearly 6 years old when I began the journey of CHF and Cardiomyopathy. I hope you are feeling alright and that you will share what you learned, when you have the energy to sit here and share with us! Wishing you the best, and counting you in my prayers! ~~Mommamaria

As we say among all heart patients I work with, "It beats the alternative, lol!" But that is what I like about participating in sites like HeartConnect. Plenty of company rowing in the same direction! We're not always making a lot of headway but we are proving we can still pull the oars! Keep on keepin' on!

Saw cardiologist. More wait and see. Scheduled for echo on Nov 17th and then a pacemaker doc the day after Thanksgiving. No comments on how tired and exhausted I am other than it is part of cardiomyopathy. Then she said goodbye that today was her last day the nurse practioner's in the office were cut and the docs didn't sign their contract with Excella Health and are going UPMC. The whole office is moving out by the airport. I had hoped to have this pacemaker thing done by the end of the year. But have to wait on echo to see what the efraction rate is. She said if I am 35 and above they won't do it. I asked for my long term prognosis and she said it is to soon to tell. It may be too soon to tell about the pacemaker yet. She thinks what the lung doc asked about the heart transplant is a bit premature at this stage of the game. Wait and see. To all my heart connect friends who are veterans and in the military I hope you have a nice day on veterans day tomorrow and I want to thank you for all you do and have done to defend our country and keep us all safe and sound. May god bless you all and keep you all safe and sound as well.

Maja,Thank you for sharing what you learned at your docs today. I am so sorry to hear about the interruption in your care. I don't blame you for wondering what has hit you with all of this. Tired is the new normal for me, ever since I have been diagnosed with (and before that) Cardiomyopathy and CHF, I have been exhausted. It is too soon to tell, as sometimes it does take some of us a bit longer to respond to therapy and medications than others. I wish you the best Thursday evening there is!

Sorry to seem like a whiner because I am tired. I just got up at 630am slept in cause the kids are off for Vet Day. I want to go back to bed. This is ridiculous. There is more to life then sleeping. I can often take my son to school at the Sr High and come home sit down with a cup of tea to watch the Today Show and find myself waking up right before lunch. This is ridiculous if you ask me. I am going to get up and get going then I am off to physical therapy for my carpal tunnel around 11am. The weatherman says chance of snow flurries so I guess old man winter is here. I guess I had my son cut the grass just in the nick of time. We like to mulch the leaves one last time before the white stuff. lol Guess I will work on disability papers and mail handicapped placard papers when I come back. I am always so tired and winded. Not sure where to go with docs. I have a echo on the 17th and a appt with the pacemaker doc the day after Thanksgiving so will pursue these before I make a decision to change. I liked my nurse practioners they took their time with me they will be missed.

Redorangedog, People that complain about their problems live longer. So tell it like it is. You have the right to sing the blues. All the martyrs that became saints had terrible lives. So complain away. Maybe someone will send you flowers. I have had to cause for bedrest several times in my life. You can exercise your legs by rotating your ankles, 10 time each and then do it again. You can do this every 2 hours. You can practice your breathing exercises, by taking in a very deep breath and holding it for a count of 10 followed by a slow exaltation, repeat 5 times, every 2 hours. Cough every 2 hours. And, nobody will know when you work those kagels. Cross-word puzzled stimulate your mind. Learn Sudoku, they are fun and you can become a pro. Remember your math tables? Can you knit or crochet? Scarfs make great Christmas gifts. Catch up on all those letters you have been wanting to write, everybody enjoys getting a letter. Get your Christmas cards ready. You are never too old to color. There are endless books for free on the Kindle, I love mine. It has all the classics for free. And, Moby Dick, Little Women,Leaves of Grass are so different the second time around. You can do your carpal tunnel exercises can be done in the supine position. The best advice I ever received was, "Sleep when you are tired and eat when you are hungry." You will have lots to do after your tune-up. If your hands hurt from writing, ask social security can help you with the writing while you dictate. All my best wishes to you and prayers for a speedy recovery. You look like a champ to me. Red

Redorangedog, Dear, Maja That was such a nice thing to say, thank you. Then, it was a mission accomplished! You remind me of my very best friend that I went to nursing school with, in the dark ages. She was about 20 years older than me and I was about 20 years older than everybody else. We became instant friends and boy was she spunky. An extremely jovial person, we laughed throughout four years of school together. Maja you need to realize that you can not help being tired with an ejection fraction like yours. Do you know what a normal ejection is supposed to be? You probably never laid around a day in your life. The best wife, the best mother, the best friend. Now be the best patient and take it easy and not stress your over stressed heart. Watch the soaps, be a princess. Some hospitals are offering a pre-hab course. They are classed designed to teach the pre-op or pre-procedure patient what to expect before and after their cardiac care and how to shape-up for whatever is going to be done to improve their health. Sometimes, shaping up means laying down for a nap twice a day. Being good to yourself means being good to your family, they want you around for a long time (not like mine). Thanks for the good wishes on Veteran's Day, I was a nurse in Vietnam. When we came home, there were people protesting the war, calling us baby killers and throwing produce at us. I caught a tomato and ate it, boy was it good after canned tomatoes for over two years. You are now in my prayer circle (hope you do not mind). There are people all over the world, of different religions putting in a good word for you. I sure hope you are still smiling. Thanks for the kind words, the same back to you, Red

Yes you make me smile! :-) And I like to laugh too! lol I might be tired due to ejection fraction but what about meds? I am on Asprin, Coreg, Doivan, Metforman, Vit C, Calcium with D, Omega 3,6,9, Cinnamon, B Complex I think that is it. lol I have been filling out the disability forms and had to list my meds and their side affects the one has a side affect of fatigue. Originally the osteopath said to try to be strong with my meds some will make me tired. He said there is not a lot to choose from. I already had to do away with the lisinpril which was replaced with doivan because it made me cough and cough. I am wondering how listing the meds with fatigue will affect my disability? I hear often disabilities are rejected the first time around. Makes me wonder if I have 20% and that is not firing the right way and if that stops then what? I asked what my long term prognosis is and she told me that it is too soon to tell. She scheduled me for a echo this Thurs and for the pacemaker doc on 11/25. So we shall see. I asked if I am a pacemaker defib candidate could we do it before the end of the year? At first they said yes and now they say it is up to pacemaker doc. No I don't mind that I am in your prayer circle. Thank you! Better go get my son up for school. He is such a tough riser. How do you do a friend request on here? I am new to all this. Take Care. Have a nice day! Maja

Redorangedog, I have missed you. I was on bedrest this week. I had a couple of flare-ups and passed a kidney stone late Wednesday night.I wanted to tell you so many things that I wrote down what I remembered from your post in the doctor's office. How much do you know about dilated cardiomyopathy? I will tell you anything you want to know from the Merck Manual, it is like the bible of medicine for the medical student. Why are you on calcium? There are new guidelines on calcium intake. The RDA cut the amount be almost half and say that it is best getting it in your food. While you are resting to conserve oxygen so your heart won't have to pump so forcefully and cause damage to your heart muscle, there is a free news letter from Harvard Health. Go to www. health.harvard.edu to subscribe to Health beat, a free weekly newsletter. You can also join in discussions with experts from Harvard Health Publications Blog (www.health.harvard.edu/blog). You can also ask personal questions by e-mail: heart_letter@hms.harvard.edu (Please write "Ask the doctor" in the subject line.) To ask for someone to be a friend, go to friends (upper right-hand corner), put their name in where it says Browse Members (I am even newer than you are and have done this by luck, so I may be all wrong) I think you press message, Their name comes up on a form that says Ask to be friends. You can ask them to be friends and they have the the option to accept or reject. There is a place by friends (maybe) that says, send a message. This, if pressed, allows you to ask a person a question or express a thought in private. I really like this part because you don't have to make a fool out of yourself in front of everybody. I hope I got something right, I found these things just by experimenting and it was pure luck when I got to where I wanted to go.The advocates really know how things work, like HeartHawk. Maja, you said your son is 15 years old. Get him an alarm clock, he needs to be responsible for getting up for school independently. You are going to need him to help you around the house. You can tell me to mind my own business and I will respect your wishes and never become mad about it. But, you are not helping him to be independent, which I think is the goal in the teenage years. And. it is so nice when your son brings you a cup of tea to your bedroom. I can teach you how to be a princess. When you have an illness, it is very nice when your family does something for you. It is a memory to cherish forever. Social Security, the more meds the better. They have side effects that make it impossible for you to drive to work safely. I begged for help. So can you. I needed help. So do you. Denial of your illness and it's limitations won't get you anywhere. If you are still Superwoman you don't need help. I was not above begging them to help me. I could not button my blouse or tie my shoes or do anything independently, so how could I work? I was not lying. I was sick. So are you. You are doing more damage to yourself by forcing your heart to pump harder. They don't want you to hurt yourself ( at least not the democrats.) I want you to tell me all about your disease and how you got it. And, I will tell you if you are correct. I have to give my eyes a rest, I have Sjogren's Syndrome acting up. Red

Like I said you make me smile. Funny you say to buy Jeff a clock. I did that a few weeks ago. He had one that was a clock radio I thought it was cool. He complains it is too complicated. So this year a few weeks ago I got him a generic electric clock. I just noticed your post I don't get on here every day. I am sorry you are not well and on bed rest. I hope you feel better. I will tell you more latter. I have had a very busy day and I am exhausted. Went for echo today know have to wait for the doc to read it and someone to call me. My group signed with UPMC and not excella. So there is major contraversary over that. I then came home and ate lunch and when the mail was delivered we got bad news that my husband who was laid off last week his unemployment was rejected. Here the company that he worked for did not report his wages. When I was laid off in June the accountant I worked for did the same to me. Any more I think I should study to be a legal beagle. We always keep pay stubs so we went back and found all them and the stubs from when he paid local taxes. We have all but two pay stubs. He then called the unemployment people to appeal their decision and he was able to do this over the phone. Yeah! We were both so upset. The unemployment people are going to do a wage investigation from the company. It will take a few weeks. We have enough saved that we will be ok. It is just the idea people don't play by the stupid rules. Then I got a Pandigital 7" Multimedia Novel (EReader) for Mother's Day this year. I am just now finding the time to play with it to figure out how it works. It is so cool. I can Email, do Facebook, I got software for it and a 32 gb sd card so I put my photos on it, my music, and got software I was saying it will do word, exel, and powerpoint. I am making spreadsheets to keep track of my meds, weight, blood pressure and pulse, and things they wan me to keep track of. I am going to make a spread sheet with the nutrition table across the top so when I eat something then I add down and it will tell me what I had. I stay under 2000 mg of sodium a day. I have done research on my dilated cardio myopathy. I read it and have it in a binder. I have a left branch bundle block too. I will check out that website soon. I am tired tonight. Oh I was telling you about my ereader. So I can also purchase books usually from Barnes and Noble. And now the library has a thing where you can go and borrow books from them for two weeks. I went to the library today to learn how it all works. So I am rightfully tired now. I don't think I am in denial about my illness. I can't understand why they are not more aggressive? Today is my second echo since I was in the hosp on 8/24 to 8/30 and was diagnosed with all this. They have me on asprin, doivan, coreg, and metformin then I take vit C, and Cal with D (she wants me on D so I added Cal for my bones), B Complex, Cinnamon for my sugar, I think that is it. The thing that bothers me the most is that my memory is not as good. I have a hard time remembering things. I often write stuff down and make notes. Or like above I get off on telling you something then I forget and start something else then I remember and go back. I hate when everyone says joing the crowd. Sometimes I am driving down the road and for a brief moment forget where I am going or the route I am going. Then it all comes back. It really upsets me. It is like I can't remember. I will talk to you more about the dilated cardio myopathy and left branch bundle block latter. I am really tired now. I have had a busy day. Tomorrow I go for physical therapy for my hands carpal tunnel it seems to be helping some. Which I am thankful had been dropping a lot can't do surgery for it because of my heart I am too high risk. Talk to you soon. Nite. Hope you feel better. Your friend MajaWhat is your email so I can send you a friend invite on here? All I see is redorangedog? It is asking me for your email? Or just send me a friend invite. Thanks! I am tired off to bed. Nite.

Mommat
Thanks for adding your voice. Your commen ton tired being the new normal is so true. Now, we have to find a way to get back to the "old normal." Please do chime in with your experience. Even the little things that you might think are small and insignificant may be important and useful to others experiencing the same things.

Absolutely, HH. Redorangedog…you give awesome tips on how to survive the boredom of bedrest, let alone how to combat the fatigue. Half the battle is keeping your mind sharp. As we all know, CHF can make a person feel like they are crazy or battling Alzheimer, when we are really just deprived of oxygen to the brain, giving us brain fog. I used to catch up on movies on DVD because I could fall asleep and go right back to the place I left off when I woke up. It helped me feel like I hadn't really missed anything, whereas waking up just before lunchtime when the last thing you remember is half of the Early Show can make us feel like we missed out 8-/ I love the exercise suggestions. Maybe I would not have such matronly arms, had I had your advice on my confinement with CHF and Cardiomyopathy. Maja…hang in there, and keep your chin up. You have to give yourself permission to have the down time it is going to take to rest up. Rest is a huge factor in recovery from heart conditions. You will feel bursts of energy, and it is key that you don't completely sap yourself when they happen. I don't think I could ever have hope of finding my "old normal" if I had not accepted my "new normal" and adjusted accordingly. I hope you are having a good day Maja! ~~MommaM

Thanks! Momma! I didn't see this till now. I am new at wondering through this site. My son has high anxiety over taking a world cultures test this morning. So I better go get him going. I know he is going to miss the bus and I am going to have to run him to school. I told him to relax if he flubs it up it is still early in the semester to bring it up. He flubbed the map test last semester and he brought it up to a B by the end of the semester. So see there can be hope. He has himself worried sick. Better go. You all have a good day! Thanks for the great advice. ~ Maja

I wish you luck, Maja. You deserve a break in the peace of mind department! I just got word that my heart function has improved greatly over last year's test. I don't know how that happened, because I still feel like dirt a lot of days. I hope you have a great week!

I am glad that your test came back good. But if you still feel like dirt what about a second opinion? My osteopath told me that if I am not happy with what my upcoming echo says and the pacemaker doc the day after Thanksgiving. That I should go to West Penn Hosp in Pittsburgh. He says that we have heart docs here in Greensburg but Pittsburgh has more experience in the left ventricle area. If I have to drive myself I'd rather stay at Greensburg. Will have to wait and see how Thurs goes with the echo and the pacemaker doc the day after thanksgiving. The thing is is that I never heard of any of these docs from atom so it is like putting hand in a hat of names and picking. I don't like that. I like to know of someone's credentials. Not sure what to think. Wish they didn't let my nurse practioner go. Guess all I can do is wait and see. I hope you have a good week too!

Echo still came back at 20%. I have to see pacemaker doc on 11/23. Would like to do this before end of year if I am to have a pacemaker. Ded and out of pockets are met. At first the cardiologist said ok now it is up to the pacemaker doc. I said any day in Dec except the 12th or 24th that is when my grandpa and then my mom died of heart. Not that I am dying just gives me a spooky feeling to do a procedure on the anniversary of a loved ones death. Will have to wait and see what the pacemaker doc says. Surprised with efraction rates low they still let me drive my car.